Why I Hated Hearing ‘Everything Happens for a Reason’ in Depression Recovery

There are a lot of phrases that are beneficial for someone going through a dark time and then there are also harmful phrases you can tell someone. Or there are also sayings that you know are beneficial, but your depression and anxiety are trying to hide it from you. It notices that it’s in fact true, but also convinces you it’s not true for you. The phrase that was like this for me was: “Everything happens for a reason…”

I hated hearing this saying. You could tell me anything else and it wouldn’t have made me as angry as hearing this. I had a hard time believing I was going through this painful time for a reason. What could the reason possibly be? To tear me apart? To make me into a helpless and dependent person?

During the darkness, I couldn’t see the light. In fact, I didn’t believe in the light. My thoughts had convinced me that life would never be the same. I would never be “happy” again. So anytime someone told me this saying, I thought they were lying to me. I felt like they didn’t understand how miserable I truly was. This was my anxiety and depression trying to hush the brightness away.

Here I am, more than a year after I was hospitalized, and this saying has come back to haunt me! But in the greatest way possible! It’s doing that whole “I told you so” voice that your parents use when they prove you wrong. Or as my mom likes to say, “That’s another tally mark for me!”

Here I am, more than a year after I was hospitalized, truly thankful that I was hospitalized. I am thankful I hit rock bottom. I am thankful I asked for help. This is kind of a silly thing to say because this was such a scary and dark experience for me and my loved ones. However, the other day I thought about how much different my life would be if I didn’t go through this. I started listing things I most likely wouldn’t have if I hadn’t gone through this. They actually all build off of one another too which is pretty neat!

1. I wouldn’t have volunteered at the animal shelter.

2. I wouldn’t have met Eevee (my dog) and rescued her.

3. I wouldn’t have an emotional support animal (Eevee).

4. I wouldn’t have started my blog. In fact, I probably wouldn’t know I have anxiety and depression.

5. I wouldn’t have connected with the people I have because of my blog

6. I wouldn’t have joined a church.

7. I wouldn’t have joined a life group in my church.

8. I wouldn’t be making so many friends in my life group (shout out to my life group for being amazing!)

9. I wouldn’t have become a part of my church’s children’s ministry. 

The list can honestly go on and on, but I just wanted to show you all the things I have gained because of my darkest time. This post isn’t meant to brag to you what I have now because my life is nowhere near perfect, but I am able to recognize the light. If you have gone through a dark season, try thinking about all the positives it brought to your life afterwards.

If you are currently going through a dark season, I’m not going to tell you, “everything happens for a reason” because I know how that may make you feel. Just know that I cannot even imagine the pain you are feeling right now. I know how lonely and scared that may be making you. I want to acknowledge your darkness because that’s what struggling with mental illness often looks like. However, I want you to fight and either see or predict the light that lies ahead. It’s there. It may be right around the corner or hundreds of miles away, but it’s there. It’s there and I want you to keep fighting because I want you here.

P.S. You get another tally mark, Mom…

If you or someone you know needs help, visit our suicide prevention resources page.

If you need support right now, call the National Suicide Prevention Lifeline at 1-800-273-8255 or text “START” to 741-741.

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Unsplash photo via Autumn Goodman

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How to Talk to Your Kids About Disability

I’m no stranger to doing it, but having to explain my disability to complete strangers is something I struggled with for a long time. Intriguingly, speaking to children about my disability has never really been an issue, but something has always irritated me when adults ask questions. In my experience there is often a lack of common sense and respect.

It’s been a learning experience for me just as much as it has been for those curious individuals I’ve encountered over the years. My own maturity and self-awareness have directly impacted some of the answers I’ve given people. And I’m embarrassed to admit that on numerous occasions I’ve been very abrupt in my responses.

I appreciate that most of the time adults try to be respectful with their words, however it’s often their body language I find most disconcerting. Adults in particular often appear awkward and uneasy when asking me questions about my disability. Or they simply don’t ask, and instead there is an awkward lingering silence. I can’t control any of that; all I can do is make people feel at ease, by respectfully responding and showing them disability isn’t something to fear.



As a mother I want my children to grow up eager to learn and discover difference, not just the differences they see in people, but the differences they see in art, science, sport and technology. This will only happen if I lead by example, showing them through my own actions and behaviors that differences are not “good” or “bad;” they simply are.

I want to teach all children that disability is not something to be afraid of, but rather something augmenting. Disability is a difference that is inherently complex, but absolutely worth learning about.

So what do you do if you’re a parent wanting to introduce disability to your children?

Pulling your child away or telling them to “shh” when they make a statement out loud about someone with a disability isn’t a great response. Instead it reinforces the idea that disability is a taboo subject. So here are some ideas to keep in mind when introducing disability to your children.

Do: Talk to your children about disability (if they ask).

Children are naturally inquisitive, and if they see a person with a disability they are going to be curious; that’s a good thing. If they ask a question, take the time to answer as openly and as honestly as possible. You don’t need to explain why a person might look different, you just need to acknowledge that they do. For example, if your child asks, “Why is that person in a wheelchair?” or “Why does that person only have one arm?” – it’s OK to say you don’t know. In fact, making assumptions is usually worse.

Don’t: Make a big deal about it.

Children undoubtedly notice disability, but typically don’t see the disability as a defining feature of a person in the way many adults do. Sometimes sitting your child down to have a discussion about disability can in fact make disability seem even more scary. If you feel that you need to talk to your child about disability before they approach you, try to make it part of everyday conversation.

Do: Encourage your children to ask if someone needs help.

As a mother I hope to raise empathetic and compassionate children, but there is a distinct difference between encouraging our children to be helpful, and encouraging them to force that help onto someone who might appear to need it more simply because they have a disability. We want to empower our children to be respectful of others; the best way is to encourage them to always ask if someone needs help — and most importantly, to respect the answer. We don’t want children to feel obligated to help others simply because they have a disability. Again, this sends a message that people with a disability are in some way less able than they are, and that is simply not true. We don’t want to establish a sense of power, because help is something we all need from time to time, regardless of whether we have a disability or not.

Do: Talk about aids such as wheelchairs and artificial limbs.

When a child first sees a wheelchair or any other object that assists a disabled person in their day-to-day life, it might seem unusual and even scary. Simply explain to your child that the device helps the person to walk, see, hear etc.

Do: Focus on what a person can do rather than what they can’t.

Often when we see a person with a disability we assume their life is difficult, and we think of all the things they can’t do or might struggle with. Instead, let’s focus on what people can do. A great way to do this is through watching athletes with a disability play various sports. Sports such as swimming, athletics, wheelchair tennis and wheelchair basketball. There are also some incredible artists and scientists with a disability. Make a conscious effort to learn more about their work.

Most importantly, allow yourself to be enthusiastic and positively curious about differences you see every day. Doing this will encourage your children to be excited about ability rather than fearful of disability.

Read more on Jessica Smith’s blog.

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The Mighty’s Mental Health Gift Guide

It doesn’t matter if you’re blasting Christmas music on December 1, or counting the days until the holidays are through — the “most wonderful time of the year” is a lot, and not always wonderful for everyone. When you live with a mental illness or have negative memories associated with the holidays, the pressure to be joyful can make you feel like a Grinch, so it’s harder to appreciate the good things holidays can bring.

Take gift giving, for example. Although gifts are an opportunity to express how much you care about someone, they often get swept into the stress of the holidays. Fighting through crowded malls, money worries and the pressure to get it “right” can make gift giving a less than merry process.

To make your holiday shopping a little easier, we’ve listed all of our mental-illness-inspired gift guides in one convenient location. If you’re unsure what to get your loved one this year, we hope this list leaves you inspired.

1. Gifts That Won’t Break the Bank

a cell phone case

9 Priceless Gifts to Give Someone With a Mental Illness

21 Self-Care Gifts You Can Buy for Under $10

15 Last Minute DIY Gift Ideas Your Friend With a Mental Illness Will Love

15 Gifts You Can Give a Loved One, Even If Medical Bills Mean Your Budget Is Tight

2. Gifts That Give Back to the Mental Health Community

A t-shirt, a tote bag and a necklace

The Mighty’s Gift Guide for Giving Back to the Mental Health Community

3. Gifts Money Can’t Buy


21 Coupons to Give a Friend Struggling With Their Mental Health

29 Gifts People With Mental Illness Really Want for the Holidays

9 Priceless Gifts to Give Someone With a Mental Illness

4. Gifts for Someone Who Lives With Anxiety

An anxiety blob and a workbook

15 Gifts to Give Your Anxious Friend

10 Gift Ideas for Your Loved One With Depression and Anxiety

14 Gifts I’d Love as a Person With Generalized Anxiety Disorder

32 Gifts People With Anxiety Really Want for the Holidays

4. Gifts for Someone Who Lives With Depression

pill case and cards

21 Gifts for Your Friend Who Struggles With Depression

10 Gifts I Would Love to Receive as Someone With Depression

A Holiday Gift Guide for Your Loved One With Depression

5 Gifts You Can Buy (and 3 You Can’t) for a Person With Major Depressive Disorder

5. What to Get a Friend Who’s in the Hospital Over the Holidays

lotion and socks

13 Gift Ideas for a Friend Who’s in a Psychiatric Hospital

6. Gifts for a Loved One Who Feels Misunderstood

couple exchanging gifts

10 Thoughtful Gifts for People With Invisible Illness

7 Gift Ideas for Your Loved One With Schizophrenia

Thoughtful Gifts to Give a Loved One Living With Mental Illness

A Gift Giving Guide From a Man With Bipolar Disorder

7. Gifts for Someone in Eating Disorder Recovery

hands holding a gift

15 Gifts You Can Give a Loved One in Eating Disorder Recovery

8. Gifts for a Friend Who Has Trouble Sleeping at Night

head phones and lavender spray

16 Products That Help People With Anxiety at Night

9. Gifts to Get Yourself (Because You Deserve Some Love, Too)

A stuffed animal and a yoga matt

8 Gifts to Give Yourself for the Holidays

22 Things to Put in Your Self-Soothing Kit

25 Things to Put in Your Self-Care Kit

Lead photo via SasinParaksa

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Meet George, the Boy Behind the Viral Autism Video

By now you’ve probably seen George Yionoulis’s viral video. Yionoulis, a fourth grader on the autism spectrum, made a video to teach his classmates about life on the spectrum. Since sharing his video on YouTube, his story has reached more than just his classmates; he’s educated people all over the world.George doing break dance

Here at The Mighty, we wanted to know a little bit more about the boy behind the video, so we asked Yionoulis for an interview. Here’s what he told us.

Q. Why did you want to make a video about autism?

So my classmates would understand why I behave like I do and why it takes me longer to answer questions.

Q. How long have you been making and mixing music?

About four years. I started out using GarageBand on my iPad and then moved to using Logic Pro X. But I still sometimes use GarageBand on the school iPads. But I started on the piano at 3.

Q. Who helped you make the video?

Both my parents. My dad edited the video.

Q. Who wrote the script?

My mom and dad ask me questions, I answer them and those answers become the script.

Q. Is there anything you wish you had included in your video?

Yes, I would include that I don’t like to see people sad or upset. If people are upset, I get upset. I want everyone to feel happy.

Also, I sometimes get upset if I don’t know the plan. I need to know ahead of time how long things will take like movies, road trips, doctor appointments and shopping trips. I need to know how many items we need to buy. That question doesn’t always have an answer, and that is frustrating.

Q. Will you be making more videos?

Yess, definitely! I have a couple other videos I also made for school, “Quadrilaterals Quadrilaterals by Geo Geo” and my New York video “George and Benji in NYC.”

Q. What do your friends at school think about the video? Have they watched it?

Of course, they watched it. It was a class assignment like I answered in question number one. They thought it was cool.

Q. How does it feel to know your video is being shared all over the world?

It makes me feel so excited that I just want to go over to those continents!

Q. What is the best part about having autism?

I get to do so many things that are fun and creative. One of my favorite things is getting to surf with Surfers Healing!

Q. What are hard things about having autism?

It is sometimes hard for me to have patience when I’m practicing something I want to get better at. I know practice makes perfect, but I don’t love to practice. Also, I wish I weren’t sensitive to gluten. I’m sensitive to it, not allergic.

When not making videos or winning his grade’s spelling bee, Yionoulis spends his time with some of his other “favorites,” including:  

George dressed as Harry Potter, with dad dressed as Dumberldore and mom dressed as McGonagal

Toy: Scratch (computer program) and his stuffed panda.

Color: Yellow.

Food: Gluten-free pizza.

Movie: “Harry Potter and the Chamber of Secrets.”

Game: Telestrations.

Holiday: Christmas.

Yionoulis’s mom, Lisa Jolley, told The Mighty how proud she and her husband are of him. “We are so happy that so many people are truly ‘getting’ him. He really is this positive force,” Jolley said.

Jolley said the family has received some wonderful feedback from kids on the spectrum, siblings of kids on the spectrum and lots of parents, including parents of newly diagnosed kids. “We have also heard from teachers and therapists, all of whom want to share his video. It has been amazing,” she added.

Her advice to parents with kids on the autism spectrum? “Remember that your child after the diagnosis is the same exact child they were before the diagnosis,” she said. “It is the same kid.”


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Exploring My Autism After Being Diagnosed as an Adult

Since my diagnosis started, there has been a lot of stress and waiting, but I now receive specialized autism support at sixth form, which being in my last year is a lot to fit in. However it is crucial, and extraordinarily useful. I’ve also decided to defer attending university for a year. Having now applied for 2019, I have some time to look at options available to me and wait for my diagnosis to be complete.

This is all still very new to me in some ways, even if familiar in others. I need a lot of time just to adjust to this change and I do not have it. This should come as no surprise to anyone who has some knowledge of autism — change is extremely difficult, especially under pressure.

The most daunting thing at the moment is being supported with issues I’ve had for 18 years. It feels like I am an old computer being updated with the software of today. I’m grateful for the help, but we are having to go back to basics. I am aware of the issues and traits I have in life, but not yet at all familiar with the reasons, or the sometimes available solutions.

We started with the simple “what is autism?” and “what does it mean for me?” videos on the National Autistic Society’s (a U.K. autism charity) website to find this. I even got given some chocolate the other day. And now I’m learning of Asperger’s being removed from DSM-5, and some of the more current news surrounding autism today. I was also pleasantly introduced to the fact that Chris Packham, a British nature expert, is autistic, and we have been using his recent documentary on his Asperger’s diagnosis to explore my autism, both at home and in support at college. It also helped me because I have a love for nature documentaries, and was already familiar with him as a television personality.

I don’t quite know how to articulate how it feels to be learning something about yourself at this stage in life, when all the material you are looking at talks about children and parents and rarely anything about teenagers and adults. I started a website, Project Infinity U.K., to start creating resources to fill that void, but to put that into a vivid image: I can’t build a fort on top of a mountain I have not yet climbed.

I’m coping surprisingly well; my autism support assistance is great, but when I sit in my support sessions every Tuesday I can’t help but wonder what life would have been like if I had covered “Social Skills” (my current focus area) a decade or more ago. Would I be happier now? More capable? Would I have never developed such severe anxiety problems?

There are positives of course — as I am reminded in those Tuesday sessions, there are kind people dedicating themselves to bring acceptance and awareness about autism. I want to be one of them one day. And more importantly, there are the specialized staff who are here to guide us through what is an otherwise hard-to-navigate situation. There is the rich history of autism, which is how I found my favorite quote from Hans Asperger, which reminds me of the subjects I excelled in or enjoyed in my academic path:

“It seems for success in science or art, a dash of autism is required.”

Sometimes the questions I am expected to answer now reign in the positives. “Why was I not diagnosed sooner?” is a key one. I feel like asking the same question every day while I am sitting and waiting for diagnosis appointment date letters. In hindsight, I think the largest portion of the blame goes to the education system. For much of the school day, I retreated into my shell, as it was more endurable than trying to be like everyone else. I know teachers were aware of my differences and when I was struggling, because they used to discuss it with me. It was even discussed in parent-teacher meetings when my attendance inevitably dropped.

My answer to making the difficulties go away once the school didn’t was to pretend I was far away. Other times I did the opposite, and forced myself to be social — this usually ended up in me being loud and talking about my fixations. People were very rarely interested in listening. And still now I know there are some people from my life who would label me “quiet” and others who would label me “brash,” despite my lack of confidence, depending on what day of the week they saw me and what was currently going on in my mind. The song “Titanium” by David Guetta and Sia (and its music video) helped me for a long time, especially once being bullied became a growing issue.

Two different schools I attended made empty promises of referrals, re-referrals and so on. They even lost vital paperwork regarding my dyspraxia. Alas, I think that is the answer to why I was not diagnosed, along with the trust myself and my parents put in the system. The system which at some point failed me. And that’s why I want to move forward as fast as possible, to leave that past behind and make up for lost time.

That doesn’t make me less autistic, does it? Diagnosed now, or 10 years ago? The issues are the same, the causes, whatever they may be, are the same. They will always be with me, even if I try to suppress certain traits or quirks. And I feel like that is neglected to a degree by the world we live in. We are rarely exposed to the idea of autistic adults being exactly that — autistic. I am now expected to learn how to socialize and function in a world that wasn’t built for me. I do so willingly, but also wishing I didn’t have to just to get my voice heard.

Jacob's neurodiversity chart results.

Jacob’s neurodiversity chart results.

I now think it is entirely possible that we don’t see autism in a positive way as often as we should because autistic people feel pressured not to draw additional attention to it. I too am always hesitant. It can be hard to express the positives if the focus is on the negatives, and the negatives affect you. It is the same pressure I feel on the train to try to act “normal” — the pressure that means I am never relaxed unless totally on my own. Will that continue forever?

I honestly believe as much as some of my so called flaws might stem from being autistic, my positives do too.
My intellect, creativity, and individuality specifically. I by no means think I’m better than anyone else, but I also don’t think it would be correct to only measure my negatives when much of the world does that already. I don’t think non-autistics register the abilities of some autistics. There are doctors, scientists, authors, and artists, both today and in history, who benefited from being autistic. Many of whom have contributed to improving your life and the world around you, without asking for anything in return. A quick Google search will confirm the fact, and yet it so often goes unnoticed.

It is also very difficult to explore what the future holds for me as an autistic person, when the past plays a vital role in diagnosis and in explanations of traits. I am considered an adult now, despite still feeling like a child, and I have to remember that everyday some people are going to now expect me to act a certain way, or make excuses if I don’t. Unless I have the confidence to create my own path, there is the danger I will just slip into a false image of me, just as I did when I was at school. It is very easy to want to be a child again, my obsessions and love of Christmas, the penguins, the cartoons, and the video games; it seemed much more acceptable to focus my life on then. The truth is, I should be able to continue those things, regardless of my age. What I’m now looking at is creating a balance.

I have always wanted to wear the same clothes again and again, almost with a religious-like approach. To the point where my grandparents when I was a child used to wash my favorite outfit when I was visiting so I could keep wearing it. I didn’t register those things back then, I was too young, but now I realize things like that have never faded away and never will. Even as I sit writing this, I have recently ordered four identical fleeces, because I know that it is the most logical solution to my scenario. They will go into my wardrobe with my three identical pairs of jeans, to be worn time and time again. Why shouldn’t the childlike wonder I receive from twinkling lights carry on too in the same way? That’s why my bedroom now has multi-colored lights hanging from the ceiling.

I also know telling someone that exact fact will not be met with the greatest of responses by everyone. Especially once I explain those lights will not be coming down after Christmas. The word “weird” tends to crop up. Heck, I will likely never discuss it with anyone at college unless they’ve seen this article or know me well.

I do want to learn how to socialize, among other skills. I know deep down humans are social creatures by biology; I am enjoying learning that so it isn’t an issue. I am more focusing on how little credit we are given for going through it, and balancing it with the rest of our lives. To an extent, I am having to learn how not to be myself. But I want to be myself. I need the balance of implementing new coping strategies and skills, without sacrificing anything.

For example, I may want to meet someone one day, and I don’t want to necessarily keep up the charade that I can socialize well for the duration of a relationship. I want to be myself; I want to be somewhat dorky and socially inept, because it is far less draining. I feel like the only way to achieve that currently is to meet someone more like myself than a non-autistic.

I think it’s just hard to explore a label you would not otherwise give yourself. That isn’t to say I don’t think I’m autistic — of course I do — that’s why I pursued a diagnosis. But I did so knowing I would need it to get the help I need in the world, to be independent at university or in a career. I have always defined my traits, my quirkiness and my needs, as me. And I sometimes wish society as a whole did that too, and would still assist me and other autistics in living their lives. Imagine that? Helping people with their issues without putting them through tests, stress and stigma.

In several groups I’m in, I’ve seen stories of how autistic children and adults have been yelled at for “acting up,” being “inappropriate” or “too loud.” I cannot help but be angry. Some of us, myself included, cannot help being loud or having no filter.

Even though we on the spectrum are all different from one another, we are united by the fact we have needs different to the majority of the world. There are times where the 4 or 5-year-old who could not help but be loud will come out in the 14 or 25-year-old equivalent. If autistic people can stay strong through our diagnosis, through the issues we have every day, and through the reactions we receive, could non-autistics not take the time to be more tolerant?

As a writer, I do enjoy writing about being autistic. It is a way of venting all of the complex thoughts and feelings that may otherwise contribute to a meltdown. But it still sometimes feels like a taboo. Just because I don’t mind being different, being autistic, doesn’t mean everyone else is just as comfortable with it. And it shows.

But in ten years time, will things be better? I hope so. I want my diagnosis to be a sign of me helping myself, not me sending myself into a world that will harm me more. If I’ve done what I want to do — if I have published a fiction book — will the “About the Author” page say “Jacob is an autistic writer”? Will I have the confidence of being open about it to the world? These are the types of things I now have in my mind alongside everything else.

I often forget to eat and drink unless reminded. And yet I am now expected to forge a path into adulthood with what feels like the weight of the world on my shoulders. I’m exploring autism as I am diagnosed with it, and feel like the world has a long way to go. My help is paced, so I don’t get overloaded, but I know deep down the world is not paced. As soon as I leave my support room, I’m at risk of being overwhelmed again. Even in my happier times, that doesn’t go away, and I don’t know how best to deal with it.

It isn’t all bad, and I want to end on a positive. I am enjoying life at the moment as much as possible. There have been some hiccups, however, as I said in the introduction: I have sent off my university application in the past two weeks for the 2019 entry. I have found some great universities that offer help for people on the spectrum, and do a great Creative Writing degree course. Though I have few close friends, the ones I do have are brilliant, and I am contented most of the time. I am writing most days, which is what I enjoy, and when I’m not, I’m getting excited for Christmas, or working and socializing at college. If things remain as well as they are currently, the rest of my diagnosis and the aftermath will not be as stressful as I keep thinking.

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Learning to Let Go of the Past and Live With Scleroderma

There​ ​are​ ​days​ ​that​ ​I​ ​can​ ​breeze​ ​through​ ​life.​ ​Days​ ​when​ ​everything​ ​comes​ ​so​ ​easily –​ ​no fuss,​ ​no​ ​muss,​ ​no​ ​pain,​ ​no​ ​fatigue.​ ​Those​ ​kind​s ​of​ ​days​ ​give​ ​me​ ​hope​ ​for​ ​the​ ​future​ ​and​ ​hope that​ ​maybe​ ​living​ ​with​ ​systemic​ ​scleroderma​ ​can​ ​be​ ​manageable​ ​and​ ​ ​won’t​ ​always​ ​be​ ​so hard.​ ​

I​ ​have​ ​been​ ​living​ ​with​ ​a​ ​rare​ ​chronic​ ​illness​ ​called​ ​systemic​ ​scleroderma​ ​since​ ​my 19th​ ​birthday​ ​16​ ​years​ ​ago.​ ​Living​ ​with​ ​this​ ​disease​ ​has​ ​not​ ​always​ ​been​ ​easy,​ ​nor​ ​has​ ​it been​ ​consistent.​ ​Systemic​ ​scleroderma​ ​is​ ​an​ ​autoimmune​ ​disease​ ​that​ ​causes​ ​an overproduction​ ​of​ ​collagen​ ​in​ ​the​ ​body.​ ​​It​ ​also​ ​causes​ ​the​ ​body​ ​to​ ​fight​ ​against​ ​itself, causing​ ​damage​ ​to​ ​the​ ​inside​ ​of​ ​the​ ​body​ ​(heart,​ ​lungs,​ ​GI​ ​,​ ​kidneys,​ ​blood​ ​vessels ​and liver)​ ​and​ ​causes​ ​the​ ​outside​ ​of​ ​the​ ​body​, ​mainly​ ​the​ ​skin,​ ​to​ ​become​ ​stiff,​ ​hard​ ​and constricted.​ ​As​ ​you​ ​can​ ​probably​ ​assume,​ ​it’s​ ​not​ ​always​ ​“a​ ​beautiful​ ​day​ ​in​ ​my neighborhood”​ ​having​ ​to​ ​live​ ​my​ ​life​ ​with​ ​a​ ​body​ ​that​ ​has​ ​a​ ​complete​ ​mind​ ​of​ ​its​ ​own​ ​and doesn’t​ ​always​ ​play​ ​fair.​ ​

When​ ​I​ ​was​ ​first​ ​diagnosed​ ​I​ ​knew​ ​nothing​ ​about​ ​what scleroderma​ ​was​ ​or​ ​what​ ​symptoms​ ​were​ ​common.​ ​​Back​ ​then​ ​there​ ​was​ ​not​ ​a​ ​ton​ ​of educational​ ​information​ ​about​ ​scleroderma​ ​at​ ​all!​ ​The​ ​only​ ​information​ ​​ ​I​ ​could​ ​find was​ ​that​ ​it​ ​was​ ​a​ ​rare​ ​disease​ ​that​ ​affects​ ​mostly​ ​women​ ​ages​ ​45​ ​and​ ​up.​ ​It​ ​was​ ​a disease​ ​with​ ​no​ ​origin​ ​and​ ​no​ ​cure,​ ​and​ ​the​ ​life​ ​expectancy​ ​was 10​ ​years​ ​after​ ​diagnosis. Which​ ​meant​ ​it​ ​was​ ​a​ ​fatal​ ​disease.​ ​When​ ​I​ ​think​ ​back​ ​to​ ​the​ ​original​ ​shock​ ​ ​I ​felt when​ ​I​ ​read​ ​that​ ​not​ ​only​ ​was​ ​the​ ​disease​ ​I​ ​had​ ​been​ ​diagnosed​ ​with​ ​incurable​ ​but​ ​also fatal,​ ​it​ ​still​ ​leaves​ ​a​ ​hollow​ ​pit​ ​in​ ​the​ ​bottom​ ​of​ ​my​ ​stomach.​ ​

That​ ​was​ ​a​ ​hard pill​ ​to swallow​ ​at​ ​the​ ​young​ ​age​ ​of​ ​only​ ​19.​ ​My​ ​life​ ​had​ ​just​ ​started.​ ​I​ ​was​ ​only​ ​in​ ​my​ ​second semester​ ​of​ ​college,​ ​for​ ​pete’s​ ​sake.​ ​I​ ​felt​ ​some​ ​reassurance​ ​when​ ​I​ ​found​ ​UPMC​ ​(University​ ​of​ ​Pittsburgh​ ​Medical​ ​Center) ​shortly​ ​after​ ​being​ ​diagnosed.​ ​This​ ​center​ ​was the​ ​top​ ​scleroderma​ ​clinic​ ​in​ ​the​ ​country.​ ​When​ ​I​ ​went​ ​for​ ​my​ ​original​ ​consultation there​, I​ ​was​ ​in​ ​awe​ ​at​ ​how​ ​informed​ ​and​ ​knowledgeable​ ​not​ ​just​ ​the​ ​specialists​ ​were,​ ​but the​ ​entire​ ​medical​ ​staff​, ​including​ ​the​ ​medical​ ​assistants ​and​ ​the​ ​front​ ​office​ ​staff.​ ​They knew​ ​so​ ​many​ ​things,​ ​my​ ​brain​ ​was​ ​in​ ​information​ ​overload​ ​at​ ​all​ ​of​ ​the​ ​new​ ​information and​ ​tips​ ​I​ ​learned​ ​from​ ​just​ ​visiting​ ​the​ ​center​ ​for​ ​only​ ​one​ ​day!​ ​I​ ​left​ ​there​ ​two​ ​days later​ ​feeling​ ​better​ ​about​ ​my​ ​outcome​ ​living​ ​with​ ​scleroderma​ ​and​ ​like​ ​I was​ ​more​ ​educated and​ ​prepared​ ​for​ ​the​ ​long​ ​journey​ ​ ​I​ ​knew​ ​was​ ​to​ ​come​ ​battling​ ​this​ ​disease.

However,​ ​just​ ​because​ ​I​ ​​was​ ​more​ ​knowledgeable​ ​about​ ​what​ ​it​ ​was​ ​to​ ​have​ ​scleroderma did​ ​not​ ​mean​ ​I​ ​was​ ​actually​ ​prepared​ ​for​ ​all​ ​of​ ​the​ ​changes​ ​that​ ​were​ ​occurring​ ​to​ ​not just​ ​my​ ​body​ ​but​ ​my​ ​emotions,​ ​my​ ​self​-​confidence​ ​and​ ​my​ ​outlook​ ​on​ ​my​ ​life​ ​in​ ​general.​ ​​It took​ ​me​ ​a​ ​long​ ​time​ ​to​ ​come​ ​to​ ​terms​ ​with​ ​the​ ​fact​ ​that​ ​​​living​ ​with​ ​scleroderma​ ​​comes with​ ​a​ ​lot​ ​of​ ​baggage.​ ​Doctor​ ​appointments​ ​two​ ​to​ ​three​ ​times​ ​a​ ​week,​ ​tests,​ ​blood work, surgical​ ​procedures…​ ​and​ ​that​ ​was​ ​just​ ​a​ ​taste​ ​of​ ​what​ ​I​ ​had​ ​to​ ​go​ ​through​ ​to​ ​stay​ ​on​ ​top of​ ​this​ ​disease​ ​and​ ​make​ ​sure​ ​I​ ​was​ ​doing​ ​everything​ ​possible​ ​to​ ​keep​ ​my​ ​body​ ​as​ ​healthy as​ ​I​ ​could.​ ​The​ ​“struggle​ ​was​ ​definitely​ ​real,”​ ​and​ ​those​ ​weren’t​ ​the​ ​only​ ​things​ ​I had​ ​to deal​ ​with.​ ​I​ ​also​ ​had​ ​to​ ​process​ ​the​ ​reality​ ​of​ ​having​ ​to​ ​let​ ​go​ ​of​ ​things​ ​in​ ​my​ ​life​ ​that were​ ​really​ ​important​ ​to​ ​me​ ​and​ ​I​ ​really​ ​did​ ​not​ ​have​ ​a​ ​say​ ​in​ ​the​ ​decision​ -making process.

Scleroderma​ ​made​ ​those​ ​decisions​ ​for​ ​me​ ​and​ ​it​ ​was​ ​not​ ​an​ ​easy​ ​thing​ ​to​ ​have​ ​to​ ​let go​ ​of​ ​goals​ ​that​ ​were​ ​extremely​ ​important​ ​to​ ​me. For​ ​example​, ​my​ ​job​ ​ ​was​ ​a big​ ​part​ ​of​ ​who​ ​I was​ ​at​ ​that​ ​time​ ​of​ ​my​ ​life.​ ​I​ ​was​ ​23​ ​years​ ​old​ ​and​ ​I​ ​had​ ​to​ ​give​ ​up having​ ​a​ ​career​ ​and​ ​the​ ​ability​ ​to​ ​advance​ ​in​ ​my​ ​position​ ​and​ ​make​ ​my​ ​own​ ​living​ ​and​ ​if that​ ​wasn’t​ ​crushing​ ​in​ ​itself​ ​I​ ​also​ ​had​ ​to​ ​give​ ​up​ ​school​ ​and​ ​my​ ​goal​ ​to​ ​get​ ​an​ ​education and​ ​become​ ​a​ ​registered​ ​nurse​. Those​ ​two​ ​things​ ​back​ ​to​ ​back​ ​were​ ​devastating​ ​to​ ​me​ ​and life​ ​after​ ​that​ ​was​ ​hard​ ​to​ ​bear.​ ​“Who​ ​was​ ​I​ ​supposed​ ​to​ ​be​ ​without​ ​a​ ​job​ ​or​ ​an education?”​ ​​​“How​ ​was​ ​I​ ​going​ ​to​ ​support​ ​myself​ ​and​ ​pay​ ​my​ ​bills​ ​without​ ​any​ ​form​ ​of income?”​ ​As​ ​it​ ​was​ ​I​ ​had​ ​over​ ​$200​ ​extra​ ​a​ ​month​ ​added​ ​on​ ​to​ ​my​ ​monthly​ ​income​ ​just​ ​in medical​ ​bills​ ​and​ ​prescriptions.​ ​“​How​ ​was​ ​I​ ​going​ ​to​ ​survive?”

Finding​ ​myself​ ​and​ ​learning​ ​how​ ​to​ ​pick​ ​up​ ​the​ ​pieces​ ​of​ ​my​ ​broken​ ​existence​ ​was​ ​not​ ​an easy​ ​feat.​ ​It​ ​took​ ​me​ ​something​ ​like​ ​five to six ​years​ ​to​ ​come​ ​to​ ​terms​ ​with​ ​my​ ​life​ ​after scleroderma​ ​and​ ​that​ ​all​ ​of​ ​my​ ​dreams​ ​and​ ​goals​​ ​I​ ​once​ ​had​ ​set​ ​out​ ​for​ ​myself​ ​were not​ ​to​ ​be.​ ​During​ ​that​ ​time​ ​it​ ​was​ ​more​ ​important​ ​for​ ​me​ ​to​ ​stay​ ​healthy​ ​and​ ​alive​ ​than it​ ​was​ ​to​ ​figure​ ​out​ ​what​ ​my​ ​goals​ ​were​ ​for​ ​the​ ​future.​ ​That​ ​time​ ​period​ ​of​ ​my​ ​life​ ​was hard​ ​for​ ​me​ ​health​wise.​ ​I​ ​was​ ​having​ ​a​ ​lot​ ​of​ ​physical​ ​problems,​ ​especially​ ​with​ ​my breathing​ ​and​ ​my​ ​skin​ ​and​ ​I​ ​was​ ​in​ ​and​ ​out​ ​of​ ​the​ ​doctor’s ​office​ ​daily​ ​and​ ​had​ ​test​ ​after test​ ​and​ ​more​ ​surgical​ ​procedures​ ​than​ ​I​ ​could​ ​even​ ​count.​ ​If​ ​I​ ​did​ ​not​ ​have​ ​the​ ​love​ ​and constant​ ​support​ ​from​ ​my​ ​parents​ ​and​ ​my​ ​sibling,​ ​I​ ​don’t​ ​know​ ​if​ ​I​ ​would​ ​have​ ​had​ ​such​ ​a positive​ ​attitude​ ​about​ ​everything​​ ​I​ ​was​ ​going​ ​through,​ ​but​ ​eventually​ ​I​ ​got​ ​through it​ ​and​ ​my​ ​disease​ ​started​ ​to​ ​settle​ ​down​ ​and​ ​I​ ​was​ ​able​ ​to​ ​focus​ ​on​ ​my​ ​life​ ​and​ ​the​ ​things I​ ​wanted​ ​for​ ​myself​ ​and​ ​the​ ​steps​ ​I​ ​needed​ ​to​ ​take​ ​to​ ​get​ ​there.

three people standing together and smiling

Scleroderma​ ​is​ ​not​ ​a​ ​disease​ ​ ​you​ ​can​ ​ever​ ​get​ ​a​ ​grasp​ ​on​ ​and​ ​be​ ​in​ ​control​ ​of​ ​the outcomes​ ​on ​your​ ​body​ ​or​ ​your​ ​health.​ ​It​ ​is​ ​a​ ​roller​ ​coaster​ ​of​ ​ups​ ​and​ ​downs​ ​and​ ​for​ ​me​ ​it never​ ​seems​ ​to​ ​cut​ ​me​ ​any​ ​slack.​ ​But​ ​I​ ​wasn’t​ ​going​ ​to​ ​let​ ​this​ ​disease​ ​control​ ​me​ ​or​ ​the​ ​way​ ​I​ ​wanted​ ​to​ ​live​ ​my​ ​life any longer.​ ​So​ ​I​ ​decided​ ​to​ ​stop​ ​trying​ ​to​ ​control​ ​my​ ​disease and​ ​start​ ​living​ ​the​ ​life​​ ​I​ ​was​ ​given​ ​and​ ​​​allowing​ ​myself​ ​to​ ​make​ ​memories​ ​and​ ​have fun. Even​ ​though​ ​there​ ​are​ ​a​ ​lot​ ​of​ ​things​ ​I​ ​can’t ​do​ ​like​ ​go​ ​ice​ ​skating,​ ​or​ ​scuba​ ​diving, or​ ​rock​ ​climbing, there​ ​are​ ​so​ ​many​ ​other​ ​things​​ ​I​ ​can​ ​achieve​ ​and​ ​so​ ​many​ ​places​ ​in the​ ​world​ ​I​ ​want​ ​to​ ​see.

With​ ​that​ ​thought​, ​I​ ​started​ ​a​ ​bucket​ ​list​ ​of​ ​all​​ ​the​ ​things I​ ​wanted​ ​to​ ​accomplish​ ​in​ ​my​ ​lifetime.​ ​It​ ​wasn’t​ ​like​ ​your​ ​typical​ ​bucket​ ​list​ ​filled​ ​with amazing​ ​vacation​ ​spots​ ​and​ ​adventures​ ​and​ ​once​ ​in​ ​a​ ​lifetime​ ​experiences​​ ​you​ ​want to​ ​fulfill​​.​ ​My​ ​list​ ​was​ ​more​ ​of​ ​a​ ​list​ ​of​ ​goals​ I​ ​wanted​ ​to​ ​accomplish​ ​for​ ​myself​​.​ ​Some​ ​were small​, ​like​ ​complete​ ​a​ ​5K​ ​or​ ​give​ ​a​ ​speech​ ​to​ ​the​ ​patients​ ​at​ ​the​ ​National​ ​Conference.​ ​I also​ ​included​ ​some​ ​bigger​ ​goals​ ​like​ being ​a​ ​board​ ​member​ ​of​ ​the​ ​Scleroderma​ ​Tri​ -State Chapter​ ​and​ ​to​ ​have​ ​an​ ​article​ ​be​ ​published​ ​in​ ​the​ ​New​ ​York​ ​Times.​ ​

It​ ​didn’t​ ​take​ ​long​ ​to fill​ ​up​ ​my​ ​paper​ ​with​ ​about​ ​75​ ​goals​ ​​I ​wanted​ ​to​ ​achieve​ ​in​ ​my​ ​lifetime​, but​ ​now​ that ​I​ ​had given​ ​myself​ ​a​ ​purpose,​​ ​it​ ​still​ ​wasn’t​ ​enough​ ​for​ ​me.​ ​I​ ​needed​ ​to​ ​give​ ​back​, ​I needed​ ​to​ ​try​ ​to​ ​help​ ​others​ ​like​ ​me​ ​who​ ​were​ ​out​ ​there​ ​in​ ​this​ ​world​ ​living​ ​with scleroderma​ ​and​ ​didn’t​ ​have​ ​the​ ​first​ ​clue​ ​about​ ​what​ ​it​ ​was​ ​or​ ​how​ ​to​ ​get​ ​treatment.​ ​I knew​ ​from​ ​my​ ​personal​ ​experiences​ ​and​ ​all​ ​of​ ​the​ ​hardships​ ​I​ ​endured​ ​I​ ​could​ ​relate​ ​to others,​ ​especially​ ​younger​ ​patients​ ​who​ ​were ​having​ ​a​ ​hard​ ​time​ ​living​ ​with​ ​this​ ​disease​ ​and struggling​ ​to​ ​come​ ​to​ ​terms​ ​with​ ​all​ ​of​ ​the​ ​sacrifices​ ​scleroderma​ ​demands​ ​from​ ​you.

So​ ​I​ ​started​ ​my​ ​online​ ​support​ ​group​, ​the​ ​Scleroderma​ ​Super​ ​Starz​, with a little help from the Scleroderma Tri-State Chapter, ​and​ ​it​ ​just​ ​took​ ​off! Only​ ​six ​months​ ​later​ ​I​ ​had ​almost​ ​2000​ ​members​ ​nationally​ ​and​ ​internationally.​ ​It was amazing​. ​I​ ​am​ ​so​ ​proud​ ​of​ ​all​​ ​my​ ​members​ ​for​ ​trusting​ ​me​ ​with​ ​their​ ​stories​ ​and deciding​ ​to​ ​join​ ​and​ ​not​ ​being​ ​afraid​ ​to​ ​ask​ ​for​ ​help!​ ​It​ ​took​ ​me​ ​a​ ​long​ ​time​ ​to​ ​reach​ ​out to​ ​fellow​ ​patients​ ​and​ ​I​ ​am​ ​so​ ​honored​ ​at​ ​my​ ​Super​ ​Starz​, ​some​ ​of​ ​whom​ ​are​ ​newly diagnosed​ ​and​ ​already​ ​reaching​ ​out​ ​for​ ​help!​ ​That​ ​makes​ ​me​ ​so​ ​happy.​ ​

Without​ ​the​ ​group I​ ​don’t​ ​know​ ​if​ ​I​ ​could​ ​say​​ ​I​ ​am​ ​happy​ ​at​ ​this​ ​point​ ​and​ ​time​ ​in​ ​my​ ​life​ ​and​ ​I​ ​am excited​ ​for​ ​the​ ​future​ ​and​ ​the​ ​opportunities​ ​to​ ​come.​ ​Being​ ​an​ ​advocate​ ​is​ now​ ​my career​ ​and​ ​my​ ​purpose​ ​in​ ​life​.​ ​Even​ ​though​ ​it’s​ ​not​ ​a​ ​paying​ ​job,​ ​it’s​ ​definitely something​ ​I​ ​take​ ​pride​ ​in​ ​and​ ​something​ ​I ​will​ ​continue​ ​to​ ​do​ ​as​ ​long​ ​as​ ​I​ ​am​ ​able​ ​to​ ​do so!

I​ ​am​ ​not​ ​going​ ​to​ ​ever​ ​sugar​coat​ ​things;​ ​living​ ​with​ ​scleroderma​ ​is​ ​definitely​ ​hard​ ​and overwhelming​ ​and​ ​at​ ​times​ ​unbearable,​ ​but​ ​I​ ​will​ ​never​ ​give​ ​up​ ​on​ ​myself​ ​or​ ​my scleroderma​ ​family.​ ​Even​ ​at​ ​times​ ​when​ ​I​ ​am​ ​at​ ​my​ ​lowest​ ​and​ ​everything​ ​seems​ ​too​ ​hard and​ ​I​ ​feel​ ​not​ ​strong​ ​enough​ ​to​ ​get​ ​through – ​and​ ​believe​ ​me,​ ​there​ ​are​ ​times​ ​like​ ​that – ​I have​ ​learned​ ​that​ ​by focusing​ ​less​ ​on​ ​the​ ​things​ ​I​ ​can​not​ ​control​ ​and​​​ ​more​ ​on​ ​the​ ​things​ ​I can​ ​control​, ​like​ ​my​ ​attitude​ ​and​ ​taking my pills and going to all of my doctors appointments and ​knowing​ ​when​ ​to​ ​lean​ ​on​ ​my​ ​support​ ​system​, ​I​ ​can​ ​get through​ ​anything​ ​if​ ​I​ ​just​ ​set​ ​my​ ​mind​ ​to​ ​it.​ ​

two women holding a boy on his first birthday

That​ ​is​ ​what​ ​I​ ​intend​ ​to​ ​show​ ​others​ ​living with​ ​scleroderma​ – ​that​ ​yes!​ ​It​ ​is​ ​hard,​ ​and​ ​yes!​ ​Sometimes​ ​you​ ​might​ ​feel​ ​like​ ​you​ ​want​ ​to call​ ​it​ ​quits​, ​but​ ​there​ ​is​ ​always​ ​a​ ​way​ ​to​ ​push​ ​forward​ ​and​ ​there​ ​are so many ​things​ ​in​ ​life​ ​worth fighting​ ​for​ ​and​ ​your​ ​life​ ​is​ ​one​ ​of​ ​the​ ​most​ ​important​ ​things​ ​on​ ​that​ list!!

Scleroderma is a rare chronic disease I was diagnosed with 16 years ago and it has totally and completely changed my entire life. Some ways for the good and some ways for the not so good, but nonetheless, my life is forever changed and it took me some time to adjust to all of the changes that scleroderma had made to my health and to me emotionally and spiritually. But I made it through and even though my life may not be everything I envisioned, it is my life and it is precious and amazing and mine!

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Finding the Magic of the Holiday Season in the Present With Chronic Illness

The holiday season is upon us, and while for many this time of year ushers in feelings of joy, generosity, warmth and even a little magic, the staples of the holiday season – giving, making lists, making resolutions, making time – also carry different meanings for those of us who live with chronic and life-threatening illnesses.

A week ago I was listening to my daughter read her letter to Santa Claus – a very ambitious list of popular toys and tech, and some surprising items, like gifts for her friends – and I found myself thinking about her lighthearted expression and the sheer excitement on her face as she read that list to me, the anticipation of the magic that still exists for her because she’s young and innocent enough to feel that anything is possible. But in that moment, I couldn’t help but think about how my own very serious reality stands in contrast to her magic, and to the spirit of the holiday season. It wasn’t a somber realization, but one that does makes you think about time and resolutions: about the past and the future.

The holidays are polarizing by nature: we’re transported into the past on the notes of familiar melodies and decorations, and before we know it, New Year’s Eve with all of its revelry and hope suddenly shoves us into speculating about the future. Whether that expedited round trip is rejuvenating or challenging depends entirely on what we’ve experienced, what our pre-diagnosis life was like, and what our current circumstances ask of us now – it’s the makings of an emotional tidal wave that often leaves physical symptoms in its aftermath.

I’ve noticed that time is a different concept for me after diagnosis than it was beforehand, and so are the holidays. I often feel like I’m running short on hope and time, and that I don’t have the energy to match the spirit of the season; it’s emotionally and physically exhausting to balance the extra commitments with my symptoms and treatments, let alone find the magic again – the same magic I’m so thankful my daughter still feels. But I’m finding, slowly, that a little bit of the magic comes back with every post-diagnosis holiday season. When I reflect on that, I can see it’s really a balancing act between the past and the future – reconciling the ghosts of my past and my inevitable future decline with the simple joys that are sometimes right in front of me.

sunset over the ocean

So maybe for me, the magic of the holiday season comes back a little more each year because I’m learning to find it in the present rather than in memories of years past or in grand New Year’s resolutions. The magic is in the joy on my daughter’s face, and in the occasional conversations with family and friends near and far, and in the love that has been a constant melody playing in the background on good days and bad. The magic is in the tangible things, and it’s right here, right now.

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